Welcome to Chronically Cute 🙂 I’m so excited to be starting this project and to share my story and experience with others out there.
*Please note that I’m not a doctor, I can’t give you medical advice. Any information on this website is from my own experience and should not be taken as medical advice. I am simply sharing my story and experience.*
To start off this journey, I want to tell you the story of how I got my diagnosis and what my current treatment is.
Ever since I can remember, I’ve suffered from chronic fatigue as well as insomnia. Obviously these things are connected, but even when I do get enough sleep, I am still exhausted all the time. As far as the insomnia goes, I’ve always had trouble falling asleep since I was a child, but it got even worse in middle school. Currently I do take a prescribed sleep aid, but while this keeps the issue under control, it is not completely resolved (nor will it ever be).
The symptom that caused me to aggressively seek out a diagnosis was chronic, debilitating pain in my wrists, elbows, arms, and shoulders. Because I’m currently studying music, this pain has prohibited me from playing piano which has significantly affected what classes I can take and my success in others. This was the biggest inconvenience, however I also found that I can’t carry groceries/heavy things, do dishes without pain, or type or write too much without significant pain.
I’ve also been dealing with aphasia (trouble finding words), limited memory, forgetfulness, IBS symptoms, low back and hip pain, easy bruising, neck and head pain, as well as intermittent poor vision and balance issues.
The (Long, Long, Long) Route to Diagnosis
I started off seeking treatment from a chiropractor for the pain, because I’ve had a lot of success in the past with chiropractors treating my back and neck pain. However, months into treatment I still wasn’t seeing results, so I decided to seek treatment from a more specialized doctor.
Initially, both my chiropractors thought I might have EDS (Ehler Danlos Syndrome), because I have such tendency towards subluxations (misalignments of the spine), but it was decided pretty quickly that I don’t have EDS because I don’t have the hyper-flexibility. I actually do have pretty loose ligaments, just not because of EDS.
Who decided I don’t have EDS? A primary care physician who very carefully examined me and then told me my pain was caused by overuse and, without running any tests, referred me to an OT to treat my arms. He completely ignored my lower back pain and other symptoms.
I felt like I hadn’t been heard and that he hadn’t taken my condition seriously enough. Because he didn’t give me a referral, or fully explain to me why he didn’t think it was EDS, I had to take things into my own hands. After talking to some friends and other doctors (my therapist and chiropractors), I got an appointment with a musculoskeletal specialist in my city who luckily did not require a referral.
From there I was referred to a rheumatologist, who finally diagnosed me with fibromyalgia. I was so relieved to finally have a diagnosis… until we started talking about treatment.
Here’s the thing about fibromyalgia: we know next to nothing about it. Some people don’t even believe it’s a real thing, there isn’t an agreed upon cause of it, and there aren’t many treatment options out there.
I was instructed to start a fitness routine and make other lifestyle changes and given a follow up appointment in case that doesn’t work to then discuss medicine options.
I will note now I am still waiting to take a blood test to check some vitamin levels, so I’ll update you when I hear about that.
Currently for treatment I am seeing an occupational therapist for my arms, a physical therapist for my shoulders (and eventually for my lower back), I’m still seeing my chiropractor, and I’m seeing a therapist. I’m currently working on finding a physical activity schedule that works for me.
I go to the doctor six times a week, can’t keep my apartment clean because all chores hurt, and have been reduced to using a rolling backpack because regular backpacks hurt my back and shoulders.
However, I also have an amazing treatment team, a very strong support system, and my cat is a very good nurse.
So things could be worse.
I will say, my diagnosis and treatment might change. I’ll keep you updated as I go through this journey, but I wanted to give you a starting point.